Category Archives: Sloven Health

Stolen time, mother blame and writing back

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Gawd. Not written a blog post for what seems like yonks. I think this is a good thing. I’ve also been on strike for what feels about a decade which is generating unusual space to think and reflect about stuff.

This morning crafting vintage crochet squares my eyes/thoughts drifted to beautiful, beautiful photos of our kids. And reflections about stolen time. Time spent enduring accountability processes, on fighting, meeting, demanding, researching, reading, raging, reading, raising, howling, meeting, missing, fighting, raging, howling and missing. Missing so bloody much.

I totted up one strand of this stolen time.

It is unnecessary. These processes shouldn’t take years. Or force families to become almost vigilantes in pursuit of justice.

I also thought about the tenacity and strength of the tentacles of mother blame that continue to try to drag me/us down. Me/us flagging here how the ‘mother blame’ stain works to circulate a narrative of ‘unbalanced woman’ disconnected and distinct from a loving family and friends.

Undertones, hints and hammers 

The still busy blame work continues across diverse settings and spaces. Examples from the last few weeks:

A comment in a Hampshire newspaper. Mazars a tool to discredit one trust or just to appease a certain someone?

A Facebook discussion. What worries me is her being in this position of power over very vulnerable people and seemingly completely unaware of what’s she’s saying.

Disproportionate indignation and the personalising of a wider, independent work outcome.

An extract from a draft manuscript in which a senior exec is portrayed as victim in contrast to an obstructive mother who really should have been offered grief counselling early on.

Writing back

A form of writing back, to borrow from post-colonial literature, is part of my/our personal, academic and activist life. Rich and I talk about it. Katherine Runswick-Cole and I have published about it. #JusticeforLB ran with it and, with George Julian’s clear vision, generated new ways of being, doing and acting.

Writing back is about trying to redress oppressive and enduring imbalances. Of reappropriating and resisting harmful discourses. Shades of refrigerator mothers, accusations of hysteria, irrationality and, ironically, imbalance.

The techniques available to public sector bodies wanting to silence people include discrediting, crushing and co-opting. In this order. I was never big on titles or throwing about my business so early attempts to discredit were short lived. Hints of a generic single mother on benefits are hard to sustain when you are married with a senior academic post. From being invisible, the Dr (‘Dr’) title assumed almost comedic proportions as events unfolded.

Attempts to crush are woven into the fabric of accountability processes as well as the everyday actions of senior health and social care figures. No funding for legal representation at inquests without punitive and intrusive scrutiny. Interview transcripts with NHS staff with sub-sections titled ‘My Relationship with Dr Ryan’. The secret review by Oxfordshire County Council in which the author spoke to everyone but us spinning a teeth achingly biased yarn. The commissioner’s letter about the terrible harm ‘my’ campaign was causing. Countless crushing examples.

Co-opting can be an effective tool in terms of maintaining the status quo. Selfie slide shows of families with ministers, politicians, big charities… People sign up to working with different strands of health and social care to generate change, working with and influencing from the inside. Rich and I dipped our toes into the co-opting pool. Both were short lived experiences as futility shone through. Outrage and incredulity this week from long term National Autistic Society supporters as the penny finally dropped. This is a corporate, self-serving beast.

And what if the silencing techniques don’t work?

Mmm. This has been a ponder and a half. The following point all overlap…

If the techniques don’t work you are not playing the game. You are at fault.

If you remain uncrushed you are clearly not assuming the appropriate, culturally ascribed role of grieving mother. You are stripped of feelings, your bereavement stolen.

People you’ve never met develop a strong and irrational (again heavy on the irony) dislike of you. A disproportionate monstering. A danger to others…

If you resist co-opting there is no resolution. And there is no resolution if you don’t. Superficiality of ‘improvement’ efforts continue with an ever ready queue of co-optees while necessary structural and cultural changes remain untouched. From the outside we don’t have the distraction of insider tinkering and remain a nuisance.

Finally, and what gets lost in all of this, is bereaved families are the only interested parties, to use coronial language, who are typically not directly connected to or part of what happened. This makes the attempted silencing and subsequent monstering all the more monstrous.

The end. For now.

[Please chip in with comment, reflections or criticism; these are very much half formed thoughts.]

Quest Craven and the end of a decade

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I’ve drafted posts on paper, on this blog and in my head on and off for weeks and months now. And kind of enjoyed not posting them. It feels right. I may revisit some of these ghost posts. Or not. Some (many) are about (malingering) grief. About the intense pain and sadness I feel. And always will. With patches of pretty much happiness. That’s cool. I don’t want to always be Captain Bringdown. I remain in awe of feelings of contentment.

I’ve got a sort of manageable grief gig thing going on that kicks in along my walk to work in St Aldates. A space of enormously wide open sky. Taking in an ever present smorgasbord of coaches outside the Ashmolean. Mentally ticking off the die cast models LB collected while acknowledging post-death models he could only dream of. The road ahead leads to the cemetery.

Tonight I want to write about one atrocity story. Before we leave this decade.

Back in the day I would likely have laid out the pre-story to this. In considerable detail with links, drawings and other illustrations. [This blog with JusticeforLB.org and 107daysofaction produced by George Julian will no doubt provide a weighty and comprehensive account of the utter shite that passes for health and social care for certain people in the 21st century. Ripe pickings for students to unpack in years to come.]

I’ve lost my appetite for up to the minute documenting. For calling out, calling on, demanding, raging and howling at the moon and the stars. Six years on the resounding response in terms of demonstrable action is ‘we really couldn’t give a flying fuck’.

The swears no longer work.

Quest Craven

This is a story about a private provider called Quest Haven who run two ‘care homes’ for learning disabled people in Surrey (amongst other ‘care’ related practices). I strongly urge you to:

  1. Have a graze of the CQC inspection report highlighting the harrowing failings in anything approaching what could be described as ‘care’ in one of the two properties.
  2. Reflect on the longevity of this company (set up in 1997) and the fact that until November 2019 the Directors (three members of the Tagoe family) claimed to be Registered Nurses.
  3. Have a look at the Quest Haven website.
  4. Note that the claimed Registered Nurse status of all three Directors has now been revised to, er, not Registered Nurses. The Directors of this private provider were all faking their credentials.

Apparently the Nursing and Midwifery Council and Care Quality Commission couldn’t give a flying fuck about this fakery. Classy bunches as ever. We have no idea how widespread this practice is and the limp response suggests there is little or no appetite to root it out. Particularly, I suggest, when those receiving the non care are of so little value. Tinned mac n’ cheese on a budget of (an estimated) £3k+ a week is apparently rock and roll.

So, as we enter the third decade of the 21st century the appetite, guts, knowledge and integrity necessary to shift entrenched failings in practice and support remain elusive. Talk is talked. Big salaries are drawn among public and third sector organisation bods. Family members continue to be co-opted and effectively silenced.

Meanwhile in a bungalow in Surrey people continue to be treated like shite by fake nurses who don’t know their care arse from their elbow. Quest Haven rakes in the readies as commissioners across the country remain apparently glad to wash their hands of ‘troublesome people’. A regulatory and commissioning system continuing to choose to look the other way.

Way to go. Way to fucking go. We need a new plan for the next decade. One that does not bolster and help sustain this rot.

Beasts, bombs and brilliance

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Beasts, bombs…

Last week we witnessed the Care Quality Commission (CQC) prioritise its reputation over the people it’s meant to serve and protect on live television. It was grim viewing. CEO Ian Trentham and Paul Lelliot were hauled in front of the Parliament Human Rights Committee to answer questions about Whorlton Hall (I previously wrote about this here). The Committee published correspondence between Barry Spencer Wilkinson, inspector, and the CQC from 2015 which painfully and painstakingly demonstrates how the Whorlton Hall provider kicked up a stink about Barry’s negative inspection findings complaining the inspection team was too large. Harriet Harman was on blistering form as she picked her way through evidence of a cover up during the session. Lelliot and Trentham blathered on, refusing to answer or chucking blame at pretty much anyone.

‘We have to wait for the findings of the investigation into the 2015 inspection report…’

‘We commissioned two independent investigations into this… TWO’

‘100s of people went in and out over that period and no one spotted abuse. NO ONE…’

After the provider complained, Barry’s report was shelved until a tiny team went in to re-inspect six months later and found lots of good stuff. The published report regraded Whorlton Hall from ‘Requires Improvement’ to ‘Good’. Things like unregulated use of a seclusion room and complaints of staff bullying fell by the wayside until Panorama pitched up three/four years later to record the abuse. [At this point my brain cannot go near what people must have endured in that time or how often this burying of negative inspections happens.]

Barbara Keeley MP has written a cracking letter to the CQC CEO raising numerous concerns.

An immediate outcome of that revolting performance was the resignation via Twitter of four members of the Expert Advisory Group for the current CQC restraint review; Chris Hatton, Julie Newcombe, Jeremy (Beth’s dad) and me. Others may have done so.

And Brilliance…

The following day Rich, Tom, my parents, sister Tracey and hub Jeremy set off for Ross on Wye for the naming ceremony of #ConnorsRig. The backstory to this is that Rhiannon Davies works for Safe Lane Global, an organisation which ‘detects, identifies and mitigates potential threats on land and in water’. Rhiannon and Richard’s baby, Kate, died in appalling circumstances in 2009. Rhiannon and I hooked up electronically a few years ago and spent many hours sharing swear and drink drenched messages of pain, rage and despair as we faced obstruction and worse from the respective NHS Trusts responsible for our children’s deaths.

A couple of months ago Rhiannon emailed me saying that Safe Lane was taking delivery of a new rig and ‘everyone from the c-suite to the drillers and workshop staff would like to dedicate the rig to Connor…’ Just wow.

We tipped up late morning to a boardroom full of treats and #ConnorsRig high vis jackets. [Sob]

Over coffee and homemade cake, Adam Ainsworth, CEO, Paddy and other staff explained more about the work of the company. It was fascinating to hear experts in such an unusual and important area talk about their experiences. We walked down to a nearby field where #ConnorsRig [sob] was parked next to an army tent. With rain hammering down, Paddy talked us through various types of bombs including the beast on the floor they’d detected somewhere in the UK. So many stories, so much passion and commitment.

Next it was lunch during which a barrage of further questions were answered then back to the rig for the red ribbon cutting, a toast to Connor and demonstrations. The afternoon finished with Tom driving the rig out of the field, through the carpark and onto the truck for its return to Kent (a six hour journey). There are brilliant photos and a video [tissue warning] of this wonderment here produced by Richard.

I can’t put in to words what this day and rig naming meant and continues to mean to us. The tears started when I saw the high vis jackets and pretty much carried on into the early hours of the following morning as I thought about how much Connor would have loved the whole thing. Heavy haulage, World War Two ordnance, his beloved London (the rig is small to enable it to access narrow spaces), health and safety… saving lives. So many boxes of joy and intense interest ticked.

I also thought about the contrast between the two days. Senior CQC figures posturing, conniving and obfuscating in response to clear questions by the Human Rights Committee. Demonstrating no apparent understanding (or even interest) that people are brutalised as an outcome of limitations and shoddy practice by the CQC. Little or no decency or integrity to be detected.

And Safe Lane Global staff just doing humanity. Treating us with respect, kindness and generosity. Adam, Paddy, Julia, Ian, Jaymie and others spent hours with us, answering a billion and one questions and giving us a day we will never forget. Memories to feast on forever and the wonderful #ConnorsRig to look out for as it makes its way around the UK snaffling out ordnance and more.

Rhiannon and Richard what can I say? Indefatigable decency and love…. You bloody legends, you.

Thank you.

 

 

Kark and Percy

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The Care Quality Commission (CQC) have a Fit and Proper Person Test (FPPR) process to review whether senior NHS bods are fit to practice. [Sorry about the acronyms and jargon here… Just typing ‘fit and proper person test’ makes my finger tips weep.]

I referred Katrina Percy, then Sloven CEO, to this process in 2015. Mike Richards, CQC Head of Hospital Inspections, ‘missed’ my email. After some chasing he said there was no doubt about her fitness to practice. Case closed.

Jan 2016 and unfitness evidence was stacking up. I referred her again. No reply from Richards. At the end of Feb I tweeted about the lack of response. He emailed saying:

Dear Sara, I apologise profusely for the fact that I must have missed this email. I know that this is not the first time this has happened, but I have absolutely no recollection of having seen it.

No? Mmm. That’s interesting. Percy is a prolific ‘absolutely’ user in communications.

Then nothing. I chased up the referral in March, May and at the end of July. Tim Smart, interim Sloven board chair, decided Percy had done nothing wrong around that time and the referral disappeared. Absolutely nothing to see here.

Why am I raking over this old billy bullshite?

The Kark Review

Tom Kark QC was asked to review the FPPT earlier last year on the back of a review by Bill Kirkup [keep up]. The review which has allegedly had a bit of a tasty journey to publication was published yesterday. A refreshing read in terms of sense and straightforwardness. And so, so chilling. I shudder to think what, if anything, might have been stripped from it. He presented a picture of what can only be called corruption. Three short extracts:

Agreed ‘vanilla’ references? Eh? Really? Is this common practice in the NHS (or wider public sector)? Deceit and incompetence wedged into senior layers while candour and transparency are bandied about like a [fuck you] hope carrot for the rest of us herbs.

Breathtaking hypocrisy.

Two of the seven report recommendations were accepted by the government before the shutters shut. Kiosk Keith styley.

Meanwhile, Percy’s new role emerged on twitter.

And I learned that ‘vanilla’ biographies are also a thing.

Global CEO, Ryalto

Global CEO, Ryalto.

Grotesque spin and reinvention.

Delivering operational turnaround of services… leading organisations through transformational change. In March 2018 Judge Stuart-Smith, sentencing the Trust, referred to the ‘dark years’ of Sloven and issued the largest fine in the history of the NHS.

Designing a comprehensive leadership development and culture change programme. ‘Going Viral’ was an almost comedic (although of course it wasn’t) ‘thing’ which cost about £5million in public dosh. The proof of (this ‘leadership’ programme is) in the pudding as they say. Earlier today Sloven were in the news again for failing services.

The pudding was shite. It simply didn’t work.

She now heads up the global team at Ryalto. A quick google reveals a tiny UK based company with a website light on detail.

Global team my arse.

HSJ awards are not shining here. A money spinner for the Health Service Journal. Self nominated nominees and Trusts shelling out big bucks for the black tie drenched reveal gig. At the same time producing dirty little numbers for the vanilla biog and reference filing cabinet. Glittery tat for bolstering failure drenched narratives.

Not a good look @HSJEditor. For so many reasons.

Percy has taken monstrous to a new level here. Providing a contemporaneous example of the grimness laid out in the Kark review. A failing exec covering up her history without compunction or check.

She’s not alone of course. All those who protected her, bolstered her or looked the other way over the years have a right old stench on their hands too.

Maybe one day these people will have the guts to properly reflect on their actions and non actions. I blooming hope so.

What actually happens when your child dies a preventable death in an NHS hospital?

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[Written 21.6.15]

After listening to Scott Morrish describe his experiences of what happened after his young son, Sam, died a preventable death in hospital (a depressingly, depressingly familiar account), I thought it might be useful to try to capture and summarise the process. What actually happens:

  1. Your child dies. Unexpectedly. Horrifically. Sometimes brutally.
  2. You are traumatised. Pitched into an unimaginable space of deeply intense pain, shock, horror, disbelief and agony.
  3. Your body expels anything it can physically; vomit, tears, shit, noise.
  4. And, from this point, for a potentially infinite period, you live a life that is, at best grey.
  5. The Trust responsible for the ‘care’ of your child will speedily present a ‘Shame but nothing to see here’ type line. 
  6. There may or may not be talk of an investigation or ‘root cause analysis’.
  7. You will probably start to ask more focused questions.
  8. The response to such questioning can be anything (or shift) from faux assurance that everything possible is being done to get find out what happened, to hostility or simply silence.
  9. The process seems to be continually delayed by the actions of the Trust. They fail to disclose documents or complete versions of documents. You become more concerned and continue to question.
  10. A narrative soon surfaces. You’re the problem. You, with your persistent questioning, your inability to ‘move on’. Your unreasonable actions are causing problems for others, including the staff involved. 
  11. There may be attempts to smear/discredit you through nuanced reframing or positioning of events or explicit blaming.
  12. If the investigation finds that your child’s death was preventable the Trust may apologise (probably publicly if the report is made public). The superficiality of this apology may become apparent when the Trust pitches up to the inquest with barristers and coached staff in an attempt to refute any real responsibility.
  13. The NHS, that cuddly British institution that you’ve grown up with warm fuzzy feelings and respect for, is not your friend when something goes catastrophically wrong.

Wow. Just bleakly bleak. With a load of bleak on top. Despite detailed NHS policy spelling out what to do. At the Clinical Human Factors Group conference that Scott was speaking at, one man told us about his experience after his wife died. The Trust were completely open, took responsibility for what happened and worked with him in investigating her death thoroughly and transparently. He emailed me after and said “I know that my journey was made easier by the commitment and personal philosophy of some staff in the hospital trust.”

So it can be done.

The big question is why does it tend not too?

[Three years on and no answers…]

Garden state

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DSCF4483 1

On holiday for two, possibly three, weeks now. Almost on cue after a weekend of NMC agitation, the panel delivered their decision around the impairment of the four nurses still in the ‘game’ at 10am this morning. Day one of annual leave. Week 13 of NMC hearings. Year 6 for the whole shebang.

None of the nurses should have faced serious disciplinary action. More a good old disinfect and reinvigorate with kick ass refresher training to blast away the sour notes of being embroiled in a languishing ‘service’ kicked into the long grass by a greedy and hopelessly inadequate new mistress/trust.

What this process has achieved is to make howlingly visible how unfit for purpose the NMC is. And generate dread, horror and anxiety.

LB’s key nurse (the one the panel inappropriately gushed over) was found ‘not impaired’ and released while the final three were found impaired in some ways. They will be told of their sanctions on Thursday at 10am. Funny how these panels can pinpoint how long something will take in advance. At least they finally discovered the Health and Safety Executive ruling over the weekend [cough cough].

Tom went to work. Rich and I wandered up to Headington Homewares to get something to oil the kitchen table. It’s been battered with over five years of non attention now. We came back and left the new ointment in the tin on the table. I read in the garden. Distracted by the recently shifting (small) terrain. There’s a raised slope in the grass with a 10 inch or so ‘dry stoneish’ type wall thing down the left hand side joining the slope to ground level.

A dip in the grass appeared a few days ago.

DSCF4415

‘Come and have a look, Rich,’ I called when I first noticed it.

He appeared, peered from the back door and said ‘Yep, it’s sunk a bit’.

Today I studied this dip every so often over the top of my book. It’s as if someone has pressed a space hopper down firmly on the slope and caused the low bank to spill out.

I ditched my book and started poking about the spillage with a trowel. Pieces of easily broken, thin, deeply rusted metal appeared just below grass level. I took some in to show Rich and Tom. Nope. No interest. They didn’t even touch them.

After another half arsed attempt at reading, I downloaded a metal detector app. Genius idea. I slowly waved my phone across the parched grass like I’ve seen people do on beaches. Red. Green, red, red.

Tom appeared in the kitchen. I told him about the app.

‘Mum, that’s never going to work’.

It does. Well it does if you get really close to metal. We used a fork to test it. Doubting Tom removed the fork hanging off the back of my phone and I went back to dig a bit more. It was hot work.

Rosie rang. ‘What’s this about you digging up the garden, mum?’

I told her about the app. We laughed and chewed the fat.

I went back to dig.

It’s hard work digging when no one digs with you.

I don’t mind. The mysteries of the past are soothing. And earthy.

The NMC and the fact free determination

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This is going to be a detailed post as it’s important to highlight just how shite the NMC panel ‘fact determination’ about the STATT nurses is. This is about the hearing process rather than what the nurses did and didn’t do.

As background context feast your eyes on this:

Maintaining public confidence and proper professional standards is a bit of a stretch given the almost fact free determination. Instead, the 66 page document contains unsubstantiated assertions, conjecture and an erasing of evidence from previous hearings. I’ll present a few examples here to give a mcwhiffy flavour of the whole thing. The six nurses are referred to as Colleagues A-F.

Batting for the nurses

The bias throughout the document is quite simply breathtaking. Here’s the description of one nurse. The same nurse who refused to answer a question at LB’s inquest on the basis of self-incrimination (evoking Rule 22).

The panel fall over themselves in a smorgasbord of judgement and conjecture which makes ‘the dog ate my homework’ seem a reasonable excuse. The extent of this bias is beautifully captured in the following extract.

The expert witness clearly states a risk assessment should have been done and patients with epilepsy should be within physical reach at all times. This reiterates the expert witness evidence from LB’s inquest and the GMC hearing. The panel attempt to bury this unassailable evidence in a set of absurd and discrediting sentences. Under some pressure… declined to express a view… She could not say…

How can she say what the outcome of an assessment might have been when it wasn’t done? Putting her ‘under some pressure’ is also a chilling comment.

A very partial engagement with ‘evidence’

The pesky facts that get in the way of the chosen panel narrative are ignored or buried as we saw above. They argue at length that the nurses could not have known LB was having seizures in the unit. That I told them LB had a seizure in May is erased. The fact [this is a fact] that I emailed the unit three days before LB died to say I was concerned he had been drowsy at the weekend is dismissed using evidence from the CTM notes.

This handily ignores the RIO notes where staff reported LB was subdued and red-eyed over that weekend [more facts]. A few paragraphs later the RIO notes are used as (quote) ‘positive evidence’ to show that a nurse made a verruca care plan for LB. The determination (see what I did there) of the panel to rule out any whiff that the nurses should have done anything differently because LB’s epilepsy was ‘well controlled’ is undermined by the fact [yep, another one] that they all knew he had had a seizure in January. Just a few months earlier. This document is more about annihilating actual facts than determining them.

The old language giveaway

There is a littering of language which demonstrates the lack of panel objectivity. I don’t know if this is typical of an NMC panel determination but sweet baby cheesus I hope not. Tom has been an employee at Yellow Submarine for 8 months now and his work involves writing reports. He knows you have to be objective with the language you use. A quick google shows the panel chair has been doing the job for way more than eight months (and I suspect is considerably older than 19) so I can only assume using words like ‘unsurprisingly’ must be commonplace among NMC panel determinations.

A further example can be seen in the following two paragraphs.

The first sentence is again absurd. How could there be evidence of something that didn’t happen? Then there is an emphatic ‘precisely’ underlining apparent good nursing practice. This is followed with a mealy mouthed ‘may have been incorrect’ in the second paragraph which makes me want to gouge my eyes out it’s so deeply offensive. It was incorrect. That’s why LB is fucking dead. [Howl]

Blame, blame and more blame

Blame rears its ugly head again. Particularly hideous given the judgement in the HSE criminal prosecution stated there.was.nothing.more.we.could.have.done. Blaming us again is astonishingly cruel.

Without any apparent reflection the panel say that “the undisputed evidence before the panel is that it could be very difficult to engage with Patient 1″. Undisputed evidence. Just a quick reminder that these nurses are specialist learning disability nurses. All they could get was ‘a grunt and a nod’…

‘It would appear’ appears throughout the document in defence of the nurses. In the following extract ‘it would appear there was limited additional information that could otherwise have been sought from the family’. How can they possibly make this judgement? One bit of evidence (that destroyed part of my already savaged heart) underlined how little understanding the panel (and nursing staff) had of LB:

In his oral evidence, Colleague B confirmed Patient 1’s fear of gangs of youths and his reluctance to go out alone.

He didn’t go out alone. He never had. This is a pretty substantial piece of information the nurses were missing.

We though (‘they’ ‘they’ ‘they’) could have/should have done more.

We visited too much (‘virtually every day’) and there is a juicy third hand suggestion that I was so difficult the unit had to introduce a telephone triage system to cope with me.

Venturing further into the realms of the absurd

The final example takes absurdity to a new level. Yep. It is possible.

One charge was that the nurses didn’t make a planned referral to the epilepsy nurse. It turns out the person they all thought was the epilepsy nurse (Miss 12), wasn’t. [I know]. With a palpable flourish, the panel dismiss the charge. There was no epilepsy nurse to refer to. Do you hear me? And this is a fact. A fact I tell you. The over-use of the word ‘fact’ in this paragraph kind of suggests the panel know they are on flaky ground.

I can almost sense weariness from Mr Hoskins (who I assume is the NMC barrister). Such twisted, twisted logic.

I got as far as p18/66 with this analysis. It continues in the same vein. Grim, biased, childish nonsense. I’m sickened that this could be considered to be of ‘proper professional standards’ in any way shape or form. When you add in the fact [yep] this has taken five years and during the interminable process the NMC shared our personal details with all six nurses and their counsels twice, it’s very clear this body ain’t fit for purpose.

Sharks on the rooftops

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I went for a wander round Headington late afternoon earlier. In part to practice taking photos with my new camera and because I remain so blooming upset/agitated by the description of LB in the NMC hearing ‘determination of (un)facts’. How dare a fucking ‘panel’ of a nurse and two lay people who never met LB and have done nothing to try to understand anything about him be so callously disrespectful of who he was.

No doubt they will argue their determination is based on evidence but evidence is not statements like so and so ‘seems to suggest that…’

Distressing, unnecessary and cruel.

In the late afternoon sun I wandered past the Co-op where LB smashed doing the shopping back in the day. Still makes me chuckle. On to Posh Fish, a go-to chippy for 20 years though our visits have dropped to rarely as the kids have grown older. My mum and dad took Rosie, Tom and LB there for some nosh on the day of my viva at Warwick in 2006. Rich and I pitched up later to have a celebratory beer with them. Such a joyful day. Posh Fish rocked. Reach for the stars stuff it seemed at the time.

Sharks on the rooftops.

Then round to the other Headington shark. The one we used to go and look at when the kids were tots. Rosie was convinced for years it had been a fish and chip shop. I think maybe as a way of trying to make sense of an enormous shark apparently falling head first from the sky through the roof of a terraced house.

At the end of the shark road is the funeral home LB was in before his funeral. Well in and out of because of the balls up over his post mortem. Behind the side window is the ‘viewing room’ or chapel of rest. It’s just a room really but a room completely and devastatingly not like any other room.

[For geography nerds, the John Radcliffe Hospital is up the road there on the left.]

As I waited to cross the road directly opposite a coach went passed blocking my view. Oh my…

Angel Executive Travel. No.fucking.way.

This coach passed me on the day of LB’s funeral. Walking in distress and agitation in the park across the road (the same road). A different type/flavour/density? of distress and agitation.

I didn’t know whether to laugh, cry or punch the air.

I’m taking air punching.

At the end of a week in which professional sharks (not our local fun and quirky ones) have once again been circling for blood and behaving like fucking spunktrumpetweeblewarblers we’re not going to let LB’s memory be sullied in a crass, ill-informed and deeply biased report.

On Friday we’re back to London to fight the fucking fight that never, ever seems to end; to try to establish the humanity of our fun, quirky and beautiful children.

‘A grunt and a nod…’

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The Nursing and Midwifery Council produced its determination of facts yesterday. Six nurses referred by Southern Health who also decided the psychiatrist had done no wrong. (We referred her. She was eventually suspended for 12 months by the Medical Practitioner Tribunal Service panel last November, saved in part from being struck off because she worked in ‘the difficult field of learning disabilities’.)

The difficult field of learning disabilities

The NMC hearings have been going on for a few months now. We boycotted them. We didn’t think the nurses should have been referred (and the NMC sploshed our personal details to them and others). It turns out the NMC panel is as unenlightened as the MPTS panel.

The determination is 66 pages long and deeply repetitive as charges and evidence overlap. I seriously hope a dedicated and brilliant doctoral student will one day meticulously analyse the content of these disciplinary hearing documents which are laden with assumptions, snide judgements, some pontification and ignorance.

The most distressing part (these documents always rip your heart out, punch it repeatedly and intricately slice it with a Stanley knife seasoned with chilli and lime) is the callous dismissal of LB as someone ‘too difficult to make a care plan with’.

No one is too difficult to make a care plan with.

A sort of peripheral (that is, never engaged with him because he wasn’t ‘assigned to her’) learning disability nurse giving evidence said LB ‘didn’t verbally communicate a lot, he’d sit and listen and you’d get a grunt and a nod but you wouldn’t get much to go on’.

You fucking what? [Howl]

The panel accepted this statement without question and thought it important enough to regurgitate in the determination. It will be on public record, ironically demonstrating where serious nursing issues lie. With no comment or reflection.

How can an NMC panel be so complicit in denying LB’s humanity?

Why are these panels so fucking ignorant?

Why? As LB would ask, repeatedly.

The determination goes on to consider the charge that we were unjustifiably restricted from visiting LB by having to ring and ask permission to visit him in the unit. [There were advertised visiting times.]

I dunno.

Phoning to ask permission to visit a patient? Within visiting hours. Daily. For 106 days….

Ahhh. Difficult mum stuff again. They really can’t help themselves. Dismissed at LB’s inquest, publicly retracted by Southern Health in June 2016, and summarily dismissed at the Health and Safety Executive hearing in March 2018 (below), mother blame is back again. And again…

Tsk, said the panel, oblivious to this history. Oblivious to LB dying. [He died.] Oblivious to any understanding of what this experience must be like. Oblivious to anything. Including an almost complete lack of off site visits and therapeutic sessions that family visits could ‘clash with’.

The charge was unproved. (“difficult”) Relative A clearly misunderstood the point of having to phone and ask. This was no (quote) “unjustified” restriction. It was justified given the frequency of the family visits.

We visited too much.

A new coating of mother-blame assimilated into these disciplinary hearings without reflection. Do panel members ever venture out into daylight? Christ. Are these panels linked to the anonymous ‘panels’ that make decisions around budgets and other stuff when our kids turn 18? Who are these panel people? How do you become one? Are they middle class (typically white) people with exclusive life experiences?

Does anyone scrutinise panel membership?

There’s no logic, sensitivity or apparent thought underpinning this latest determination. And no dot joining between the evidence from other hearings (or around the deaths of Edward, Richard, Danny, Thomas, Oliver, etc etc etc). Each person is singled out as an atomised being, subjected to different, unfathomable, barbaric rules, actions and judgements. Without any apparent recognition or awareness by ‘panels’, coroners, ‘independent investigators’…

Why are these dots so hard to join?

Ordinary people (and juries) get it.

Don’t poke the beast…

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18

The footies on. Somewhere. Everywhere, it’s so damn quiet. Home alone with Bess. Listening to music. Head spinning from so much happening and not happening. LB’s five year death anniversary speedily approaching. The day before NHS 70th birthday celebrations. I feel queasy already. Hunt and NHS England remain silent about the leder review. Bouncing back FOI requests as too expensive. Refusing to comment.

An extraordinary level of engineered wilful disinterest.

Non-disclosure

I put in a Subject Access Request a month ago asking to see Valerie Murphy’s statement for the MPTS hearing. She read my statement. Her barrister commented on it during his illness inducing cross-examination.

The answer came back today:

“I do not believe there is information that is disclosable under the DPA”. Oh. The GMC will however disclose extracts relating to LB if I sign a confidentiality agreement.

Murphy had no such restrictions. She can say whatever she wants about my statement. To whoever she chooses.

And so it continues..

A week ago a bizarre comment was posted on justiceforLB.org:

The answer to George’s question was this:

Spencer and Murphy studied at the same university at the same time.

Oh my.

[Howl].

We know snarky (or worse) and largely unchallenged discussions go on behind the password protected doctors.net (and I’m sure other forums). These started within weeks of LB’s death. Mother (and other) blame has had a remarkably unremitting purchase in health, social care, education circles for decades now. Noted and discussed at length by families. A steely silence (apart from the odd dissenter) from professionals who must recognise this shite for what it is.

These random, unexpected and typically incoherent attacks are pretty hard to endure. Our boy died. He died. You just don’t seem to understand this. He was 18. Can you imagine your child dying a preventable death in the ‘care’ of the NHS?

A beloved and beautiful child. Dying. A preventable death.

Can you begin to imagine?

Why don’t you fucking try to imagine?